Tuesday, September 25, 2007

for those in Florida...Start Fighting by Writing

A message from The Unforgettable Fund:

Start Fighting by Writing, Florida.

If you are in your 40's or older, and your parents are in their 80's, there is a 50% chance your mother or father will have Alzheimer's disease. Many get the disease younger, and some even get it in their 60's and 70's. But the majority will succumb some time in their 80’s. Because there is no prevention, every single one of our aging parents are at tremendous risk.

Caring for a loved one with Alzheimer’s is overwhelming. Emotionally, how strong will you be when your mother can't remember you're her child? Physically, how strong will you be when your father raises his fist to strike you believing you to be an intruder? Financially, how strong will you be when the bills for their care start to arrive?

Take it from one who's been there - we are NOT prepared to deal with this disease. In my eleven years of caring for my father, I never met a person who said, "Alzheimer's disease? Piece of cake." Instead, it's the telling of horror stories few are willing to talk about publicly. Or the sharing of sacrifices made to keep our loved ones in their own homes. Or the dilemma of post traumatic stress that swamps surviving spouses. For our parents' sake, for our sake, and that of our children, we can’t forget without a fight.

And I have a fight with you, Florida legislature. Why in the world would you allocate $15 million dollars a year to Alzheimer’s research, build the Byrd Center, the largest free-standing Alzheimer’s research center in the nation, fill its labs with leading scientists, set up state-wide collaborations with other Alzheimer’s labs, and then yank $10 million away from it? I understand the need to care for our elderly through outreach programs. Trust me, I understand tightening the belt. But what you’re doing is strangling the only hope there is for defeating Alzheimer’s disease – scientific research. Let my family’s experience stand as a warning – our current population of 80-year-olds are the first wave of an epidemic of Alzheimer’s that will crash into every living room throughout our state if we don’t do everything we can to stop it. Research can and will stop it, without that hope we are in for a nightmare. Heed the warning, listen to your constituents, and protect this research. As the only fighting chance we have, honor your elders and treat this research with the respect it deserves. Get your hands off it.

Be alarmed, voting citizens of Florida. For this kind of political axing to occur, your representative doesn’t understand this disease, or how its playing out in our homes across the state. We can teach them. Please share your story here - patty@theunforgettablefund.com - and I will see to it that every single one of your letters gets to the Governor of Florida. Tell everyone you know, everyone with an aging loved one in Florida, to start fighting by writing.

Please include your contact information. And send this request to as many people as you can.

Start writing, it’s time these stories got told.

Patty McNally Doherty

Please do NOT post your stories here, please post them on Patti's blog or email her using the above link. If you want to cross-post, that's fine, just you've done so.


Anonymous said...

Byrd center is full of politics and grossly mismanaged. You think blind funding is sufficient to cure alzheimer? They are playing ball with our tax payers money and nothing else! read these links...

Byrd center criticized
another article.....
Inside rs comments

Patty McNally Doherty said...


Thanks for giving me the opportunity to respond to this post on your blog. Sorry to bring the discussion here, and if you want to end it after my post, I understand completely.

There are two issues I’d like to discuss.

I, more than most, take issue with the notion of “blind funding”. Pouring our tax dollars into useless pork is indeed something that should be forbidden. When your father is peeing in the planters at the mall because he has no sense of who or where he is, some of us might consider places like the Byrd a necessity, not something that should be dismantled or threatened every year by the legislature. There are NO perfect institutes and we can rant and rave about how bad things are and how we’re all getting ripped off, but when the rubber hits the road, you’re going to pray someone is in a lab somewhere working towards curing Alzheimer’s disease. There is no issue with the science coming out of the Byrd. There is no question as to their ability to generate grant money - they are the only federally designated Alzheimer’s Disease Research Center in the state.

But perhaps “Anonymous” takes issue with the behind-the-scenes politics that built the Byrd in the first place.

I've heard that Johnnie Byrd was a contentious, tyrannical politician. I don’t think there is any argument about that, is there? Many have said it’s the name that causes the inflammation of discussion about the Byrd. My solution to that is auction off the name - one letter at a time - and let the people angered over the way the Byrd was railroaded through the legislature purchase the removal of each letter. If hatred could have a price, each letter of Johnnie Byrd’s name could generate a whopping amount of money to support Alzheimer’s research. By the time it’s finished, there would be enough money collected to fund the Byrd for years.

• The anonymous comments left by people on the mentioned articles are very interesting. Thank you for providing the links. I agree that money spent on lobbyists seems a waste, and PR firms have always made me scratch my head - why do we pay companies to do what advocates are supposed to do? Perhaps the answer can be found by asking the millions of people who sit on their couches, quarterbacking the right and wrong way of doing things without ever getting off their butts to be heard. And while I understand the fear an employee might have by speaking out against their boss, hiding behind anonymous posts seems even worse.

Complaining anonymously is a start, I guess. It offers the cloak of anonymity to be used as protection. But if real change is ever to occur, and if real problems are ever going to be solved, it will take real human beings, stepping forward out of anonymity, to address them.

We are all afraid of losing the roof over our heads, keeping our careers on track, and keeping our kids fed. None of us want to risk losing what we’ve got. But that doesn’t release us from our duty to speak the truth and change things that need changing, especially in the publicly-funded institutions in which our best and brightest scientists work.

Til that happens, I support this institute, its research and its responsibility to push Alzheimer's research forward in the state of Florida.

Meanwhile, anybody want to start the bidding on the letter “J”?